Lower Dosage / Higher Frequency
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Posted by: John Brenner ®

10/13/2002, 16:59:26

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Have been considering getting lower botox dosage (1.5units each side), but more frequently every 2 months to see if it helps.

Higher dosages have been leaving me breathy for 3+weeks and then the spasms have started right away. I am hoping that this new approach will shorten the breathiness while giving me some good quality voice time that I have been missing.

Anyone tried this type of approach before?

Thanks,

John

AD/SD







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Re: Lower Dosage / Higher Frequency
Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: David Barton (NZ) ®

10/13/2002, 17:14:33

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John, I was in this situation, and tried what you are suggesting - it was lose/lose. Still breathy, because both cords were being injected, and the spasms returned quickly due to the low dose. I went as low as 0.5 bilateral and was still breathy.

For me, the only way out of it was to go unilateral, so that one cord was functional, and the other weak - to control the SD. I am currently very satisfied with my treatment regime - which is unilateral (2 sites in right cord only) and 10 units every 6 months.

Good luck

David Barton (AD/SD, Auckland, NZ)







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Re: Lower Dosage / Higher Frequency
Re: Re: Lower Dosage / Higher Frequency -- David Barton (NZ) Top of Thread Archive
Posted by: betty ®

10/15/2002, 20:49:08

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David, How did your doctor determine which vocal chord to inject?

I am interested in getting the injection in just one side since the more recent injections have been difficult not only with the breathy/no voice for 6-8 weeks, but, choking has been a real problem. I wondered why your doctor injects the right vocal chord each time.

tn.mix/sd






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Re: Lower Dosage / Higher Frequency
Re: Re: Lower Dosage / Higher Frequency -- betty Top of Thread Archive
Posted by: David Barton (NZ) ®

10/15/2002, 21:11:02

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Betty - I don't recall the exact details but it is something to do with the anatomy of the larynx. Apparently the right cord is slightly easier to inject than the left. It probably doesn't make much difference though.

What is more important, to me anyway, is that the SAME cord is injected each time. When I tried unilateral but alternating cords - ie left/right/left/right .... then I found the uninjected cord was still fairly weak from the previous injection and I was still too breathy. Another advantage with unilateral injections is that a higher dose can be used and this, in my opinion, means the shot lasts longer. A slight refinement to this unilateral approach is that my doctor injects two sites in the right cord - this spreads the Botox around more and acts as an insurance policy in case one shot is in the wrong place.

David Barton (AD/SD, Auckland, NZ)







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Re: Lower Dosage / Higher Frequency
Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: Laurie ®

10/13/2002, 20:32:56

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John,

I also had severe (6+ weeks) breathiness issues with my bilateral botox injections. I lowered the dose down to about 1 unit bilaterally and was still initially voiceless and then very breathy for over 6 weeks... then I would get about 3 weeks of relief at most! The voicelessness/breathiness was almost worse than the SD itself.

I recently switched to unilateral (one-sided) injections and so far I'm quite satisfied with the results. I have very little breathiness and the injections last just as long. My voice quality (during the "normal voice" period) is also better w/ unilateral injections. I've had two successful unilateral injections so far and plan to continue with this approach in the future.

Laurie (AD/SD, NYC)







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Re: Lower Dosage / Higher Frequency
Re: Re: Lower Dosage / Higher Frequency -- Laurie Top of Thread Archive
Posted by: John Brenner ®

10/14/2002, 12:42:20

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Laurie,

Sounds like you had a similiar situation as David and have had better results with the unilateral approach. Do you mind if I ask how much of a dosage that you are getting? David is getting 10 units into one side, which sounds like alot.

The most I have ever gotten was 2.5 units each side.

Thanks, you have given me something to look forward to with my next treatment.

John







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Re: Lower Dosage / Higher Frequency
Re: Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: Laurie ®

10/14/2002, 20:11:50

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Hi John. My first botox injection was 2.5 units... my subsequent injections were 1.4 units, 1.25 units (several times), and then about 1 unit (all bilateral). The shortest breathy period I had was about 5 weeks which was a little ridiculous considering the severity of the breathiness I experienced. The longest breathy period I had was over 2 months! For whatever reason, I am very sensitive to bilateral injections.

My first unilateral injection was 2.5 units (May 2002).... and the one I just had a month ago was 6 units. I am considering going higher next time as I basically had no breathy side effects this time and perhaps a higher dose would last even longer. But I will play it by ear pending the outcome/duration of this injection which, so far, has been good.

-Laurie (AD/SD, NYC)







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Re: Lower Dosage / Higher Frequency
Re: Re: Lower Dosage / Higher Frequency -- Laurie Top of Thread Archive
Posted by: Doris St. Clair ®

10/15/2002, 15:12:01

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Hi Everyone, I alway thought that the longer the breathiness the better the results. Whenever I have breathiness for a few weeks my injection seems to last longer. Without the breathiness it either doesn't work at all or last for about 2 weeks. I have 2.5 units in each side.

Doris St. Clair A/D SD VA







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Re: Lower Dosage / Higher Frequency
Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: Ingvar ®

10/14/2002, 14:25:22

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John, I am a patient at the Huddinge University Clinic in Stockholm, where they have experimented a lot with unilateral and bilateral botox shots during a 10 year period. Initially they were only doing unilateral treatments and presently they treat 90 % of the patients bilaterally based on the obtained results with the two methods on various patients. They favour low doses to avoid voiceless and breathy patients.

I get bilateral injections every 8-10 weeks with 0,3 U in each cord and I am essentailly always free of symptoms. I understand that their bilateral doses vary from 0,2U to 3,0U, the unilateral doses are much larger as described in the message from David Barton.

In my first treatment I got 1,25U in each cord, wich made me voiceless for 4 weeks and breathy for another 3 weeks. From that experiment they knew that I should have a very small dose.

Good luck in your experimenting!

Ingvar Andersson (AD/SD, Malmoe, Sweden)







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Re: Lower Dosage / Higher Frequency
Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: Lib Haywood ®

10/15/2002, 08:20:18

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John, the last couple of years of BoTox injections left me breathy for four to six weeks after the injection. My doctor and I kept decreasing the doseage until my last injection was .625 in each cord. I was still breathy for several weeks. That problem and the fact that I was tired of getting BoTox injections led me to having the SLAD surgery. Prior to the surgery I had 34 BoTox injections over a period of ten years ranging from 5 units when I started to .625 when I stopped them.

Lib Haywood - Charlotte, NC AD/SD







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Re: Lower Dosage / Higher Frequency
Re: Re: Lower Dosage / Higher Frequency -- Lib Haywood Top of Thread Archive
Posted by: Lib Haywood ®

10/15/2002, 08:28:28

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John, after reading the other comments on this subject. I will add one thing. I did try the unilateral injection one time at NIH. They gave me 20 units in one cord and I was very unhappy with it. After reading the other comments on the BB, I feel that may be the way to go or at least give it a try. The smaller amounts seem to work.

Lib







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Re: SLAD surgery--more info please
Re: Re: Lower Dosage / Higher Frequency -- Lib Haywood Top of Thread Archive
Posted by: Larry Becnel ®

10/15/2002, 11:41:25

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Being somewhat new to this board, I'm still not sure what SLAD surgery is. Was it beneficial for you? Larry, AD/SD, New Orleans






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Re: SLAD surgery--more info please
Re: Re: SLAD surgery--more info please -- Larry Becnel Top of Thread Archive
Posted by: David Barton (NZ) ®

10/15/2002, 17:43:25

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Hi Larry

Try using the search function on this board .... click on search, and enter "SLAD" and if you enter a period of 180 days you will obtain over 30 posts.

SLAD stands for selective laryngeal adductor denervation. The technique was pioneered by Dr Gerald Berke ("Berke" is another term to search for, BTW) and he spoke about it at some length at the NSDA Symposium in Scottsdale, AZ in March this year. If you want to read a transcript, take a look at www.dystonia-support.org and click on "Symposium reports".

The surgery seems to work best for uncomplicated AD/SD. Like any major surgery it should not be undertaken lightly. There is little information about long-term results, but many of the people that have had the surgery are very pleased with it so far. Balance that with the fact that at least two males have ended up with no voice, at all, after the surgery.

David Barton (AD/SD, Auckland, NZ)







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Re: SLAD surgery--more info please
Re: Re: SLAD surgery--more info please -- David Barton (NZ) Top of Thread Archive
Posted by: Larry Becnel ®

10/17/2002, 09:07:40

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Thanks, David. I had used the search feature, but evidently had not gone back in time long enough. Your reply was helpful. I appreciate your taking the time to respond. Larry ADSD, New Orleans






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Re: Lower Dosage / Higher Frequency
Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: Myra Barnes ®

10/15/2002, 23:11:32

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Hello John--

In my 25 shots (all unilateral), I've graduated from 7 units down to 3. The lower dosage does give a shorter breathy period, 3 or so weeks as opposed to 5 or 6, but the overall cycle lasts the same--four months, give or take a few days. For me at least, lower dosage works as well and doesn't result in higher frequency.

As for where the shot is placed, my doctor has me say "eeeeee", which apparently identifies the correct location. Others can probably explain this better than I can, but I've never had a bad shot.

Myra AD/Texas







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Re: Lower Dosage / Higher Frequency
Re: Lower Dosage / Higher Frequency -- John Brenner Top of Thread Archive
Posted by: chris moore ®

10/22/2002, 18:45:05

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Hello John, i had my first shot of botox last May, 2002. I was breathy, or maybe I should say I was speechless for 4-5 weeks, then summer came along and my voice improved somewhat, but it never got really good. I'm considering your approach next month, lowering the dose and see what happens. I'll let you know, after Nov 7th . Good Luck, Chris






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